Final Entry, but not the end....

This is my last entry on my journey to remission. I am almost there. I did not achieve full remission yet, but I know I will get there with more time. My body was quite damaged from the breast implants, and I needed to take things very slow the last three years post explant. I had setbacks and moved forward too many times to count. What I have achieved over the last three months is substantial, sustained, progress. I am currently focused on mitochondrial repair, and this is the first time my body is accepting of the supplements I need to get me there. Over the last three months the following symptoms have resolved: diarrhea, headaches, daily body aches, rashes, anaphylaxis, nails stopped splitting, and hair stopped falling out. I can shower with warm water again! I had heat intolerance and had to take cold showers or deal with rashes and itching if I took a warm shower. The following symptoms have improved substantially and are minimal at this time: brain fog, muscle, and joint pain (except degenerative knees, but improved), exercise intolerance. I am still quite fatigued, but this will improve as I continue to heal. I have learned to be patient with my body and my brain-they have been through a lot. I have also substantially reduced stressors in my life, which unfortunately meant eliminating some personal relationships that were too toxic and contributing to setbacks. I ended this 3.5-month journey with a get away with my husband. We went to the north shore for four days. We dined out, I went to target, and stayed at a resort for three nights. The last time we attempted a short honeymoon a year ago, I went through three epi pens on our way up north and had to stop in the ER to get more and start steroids in an attempt to enjoy the time we had together. We have not taken our “real” honeymoon yet as I have been unable to travel. I return to my office (day job) this week for two days a week and I have a business meeting also scheduled after work this week. The little things we take for granted, like leaving the house, going to a store, or going outside for walk, I am now excited about these things at a ridiculous level!!! LOL! All my fellow breast implant illness/mast cell activation syndrome people can understand and relate to how much those things do not matter until you cannot do them. I attribute my progress to resilience, positivity, and never giving up. I had to eliminate triggers coming into my home. I also am grateful for my functional medicine physician, who got my body to a place where it was less damaged, and I could heal. I am grateful for the NAET practitioner I have been working with, the support groups I am part of, Melissa at Healing Within, Jolene-Massage Therapist and Reiki Master, and neural retraining. I am grateful for my family and prayers for my healing. I could not have come this far without my wonderful, supportive, husband Tom. Tom has been through the worst with me, he has called for EMS, held my hand, and wiped my tears. He has lifted me up when there were days, I did not have the energy to fight. He supported each and everything necessary to achieve healing. He was my biggest cheerleader and believed in my abilities to manage my healing and coordinate my healing team. It was not one thing, but a combination of many. I am grateful for this journey as it has also allowed me to help others achieve their goals of health. While this is my last entry on this journey, my journey is not over yet, and I am confident I am close to declaring that I am fully healed. Thank you for following my first attempt at blogging.

Ups and Downs and All Around.

05/29/22-Up and Down and All Around…

It has been a while since my last blog entry. I experienced some ups and downs, but still making progress. I had to break my isolation because my mother-in-law passed away. Regardless of what is happening, sometimes we just need to be where we are needed. I am over two months anaphylaxis free! Attending wake, funeral, and staying at Airbnb (my in-laws home is too fragrant) definitely created some challenges for me. Its weird, no anaphylaxis, but my body still felt the “anaphylaxis hangover.” I am sure many of you know what I mean. It was encouraging be able to exist in a very fragrant environment (I wore a mask that filters fragrance/Covid precaution), but even though I could not always smell it, it impacted my body. I started feeling unwell and developed bumps in my mouth and itching, so I could not participate with family as long as I wanted. It is still progress. I am still focused on remission, but I have added additional things for mitochondrial function and repair, and to bind more effectively at the cellular level. I am also working to correct adrenal fatigue and I am making gains there as well. Finally kicked caffeine! I kept trying to find natural caffeine sources that would not contribute to stimulating mast cell dysfunction, but I needed to quit to see how much that was playing a role. I feel better without it. Yes, the coach struggles with quitting things sometimes too. Return to office setting two days a week is 06/15/22. I am grateful for improvement, and I am looking forward to the day I no longer have to worry about the impact of MCAS.

Milestones and Metals!

Over the last week, I felt good! I experienced a day or two since August, 2021, where I felt good, but not for  an entire week. It is difficult to assess exactly what is causing this change as there are so many efforts, but what is new over the last month of no anaphylaxis is treatment with NAET practitioner, adjustments in dosing with PC protocol and addition of vitamin C consistently, hyperbaric chamber, neural retraining, and ionic foot baths. Also banning the offenders of “perfume assaults” walking through the door. There is now a sign on my door warning offenders not to enter; this has helped people be more mindful. I had another hyperbaric treatment yesterday and ionic foot bath (results-metals and lymph congestion). I also had an amazing massage. One odd challenge I experience after massages is either a mast cell response that reveals itself as arms burning and sharp nerve pains or its part of autonomic response. I am not sure, and neither is my doctor of the exact reason this happens; it just does. It also happens when I lift weights, which is why I hate lifting weights. The only thing that calms it down is Benadryl, but only for a couple hours. This challenge typically lasts two to three days after massages or lifting weights. We had a PureAir system installed in our HVAC system on Friday-the air is better in the house. We also got rid of some off-gassing area rugs. I am waking up with zero lung congestion and less puffiness since the installation. Great things are happening! I am grateful I am hitting milestones, finally!

Challenges followed by hope...

04/09/22-Challenges still exist; however, I am choosing not to focus on them as much as part of neural retraining. We are having some difficulties finding someone who can deal with the issues in our home, but we did find a local business who will install a PureAir system directly into our HVAC system, so my husband scheduled the service.

Over the last two days, I met and spoke with some amazing ladies, who are also breast implant illness (BII) survivors. One introduced me as a victim of BII, which I did not like. I do not think of myself as a victim, but as a resilient woman and temporarily “wounded healer.” One of my infusion nurses introduced me as Tammy, the Wounded Healer, to tell my story to another patient one time. One of the ladies I met is also a wounded healer and is now part of my healing team. “M” had breast implants and became very ill as well, experiencing some of the same things I did. She is still healing, but has come very far. She also acquired MCAS, but it was unclear if it was from her implants or Covid. Anyway, I underwent a hyperbaric chamber treatment and ionic foot bath today and feel amazing-”M” provided these treatments today and also turned me on to a supplement for MCAS that I had not heard of, so I will try it. The other resilient woman I met two days ago “C” told me about what the hyperbaric treatments did for her and I was sold. Speaking with “C” was like talking to someone I have known for a long time even though we just met.

I think people show up in our paths when we need them and I have now gained two friends.

Did I just have a panic attack?

03/20/22-My husband arrived to help pack my things to head home. We talked on the phone (hands-free) nearly the entire 2 hours and 45-minute ride home. I shared what my week was like and what I have learned in neural retraining. I have more insight than I did before. I think many with MCAS do not realize how exhausting and time consuming it becomes to manage the environment or worry about what smell that will cause a reaction is around the corner; it just happens. It becomes your new normal; a dysfunctional normal. I did not realize how much real estate the sensory of smell had taken up in my brain. With MCAS your sense of smell becomes distorted and sometimes it is difficult to recognize what you are smelling and if it is a threat or not. I experienced this after getting home that night. There are still issues in our home since the fire that we are working to solve, but we are waiting on professional’s schedules so it is not happening as quickly as we would like. When I walked in the door, I kept running into different smells throughout the house, intense chemical smell, dead body, something I do not know, what is that smell?? Every where I turned, were unfamiliar smells. Were they threats? I need to get away!!! My husband was apparently talking to me, and I didn’t even hear him. He thought I was angry because the kitchen was a mess and there was some spoiled kale in the refrigerator (this is what my nose interpreted as dead body smell). I went outside to get some fresh air and use my inhaler, respiratory essential oils, and take a rapid-acting antihistamine. My skin was burning, and a rash was starting along w coughing and wheezing. I do not want to give epi. Outside, someone had a bomb fire, which was giving me a headache. UGH! Where do I go?? Is anywhere safe for me to breathe?!?!  I was in tears and went to my room and turned on one of our air cleaners and eventually fell asleep after the itching subsided. I think I had my first panic attack. I could not talk to my husband until morning and explain what was happening. He didn’t even realize what was happening as I was inside panicking vs. showing external signs. He was understanding once I explained. In the morning I was able to distinguish what some of the things I was smelling were: off gassing area rugs in our living room, dining room and my office; fragrance from the back of the hallway; kitchen smelled fine in the morning because my husband got rid of the Kale and cleaned up the kitchen. This is an example of how distorted and sensitive smell can become. Today will be better.

The Last Sunset...

03/18/22-Day after day, I wake up feeling awful. Worse than I did at home. My wellness routine improves things by the end of the day and so does fresh air, but I cannot start over every day. As beautiful as it is, I cannot invest anymore time and money to try to make this my healing space. I am going home. I am trying to stay positive, but I am truly starting to wonder if I can exist safely anywhere. My next stop may have to be a deserted island. I would miss my husband and daughter. Obviously not a realistic plan. Going home, some things will have to change. Last sunset of my stay here…so beautiful.

"Challenges"

03/13/22-I am going to try to sleep in the bedroom. The carpeting was new 8 mos ago and that is all I smell. Success, I slept through the night, but awoke w toxic eyes and sore body.

03/14/22-Second night trying to sleep in the bedroom awoke w a terrible headache, itching, rashes, body hurt and generally feeling mast cellish. I feel poisoned. Moved to the leather couch during the night, which has been non-reactive, but not the most supportive to make my bed for the next 3 months.

03/15/22-Awoke with a headache feeling poisoned again. Worried that I am not keeping up at work as I have been so foggy since the anaphylaxis from the first day I moved in. NAET practioner checked in and gave me some hope. She advised me how to collect air samples of the problem areas in the cabin and she would work to desensitize my body to those areas and the mattress, so I can try to get back into the bedroom. Went for a walk tonight w my friend, who I am renting from. I have to keep my distance because I smell laundry soap, instant headache and nausea. She has a big heart and has been receptive to education. Tomorrow will be better. On to yoga when I got back and DNRS. I have been doing DNRS daily before bed. I need to continue on my wellness schedule. I may have to go home.

Air Purifier and Husband to the Rescue!

03/11/22-My husband arrived late with both air cleaners. We are both exhausted; him from traveling (he returned from FL late last night, worked, then drove almost 3 hours to see me) and me from fighting my challenges all week. Air cleaners do your job!

03/12/22-Better day! Air cleaners are working, but I noticed some of the same symptoms I was experiencing when I would go to sleep in our bedroom have returned. More investigating…I do not want to be an investigator anymore. I am supposed to distance myself from thinking about this. Turns out I am likely sensitive to potassium permanganate, which is in one of my purifiers. My husband will leave our other air cleaner. Happy he is here, but our time is too short. Even though he is here, I feel alone (self-isolation creeping in again). Many conversations focused on MCAS and problem solving; I hate it.  Virtual Reiki session today. A flood of emotions came out during the session, and I could barely speak through crying for a period of time. I noticed my mediations are deeper and more chakra colors are seen after my Reiki session for a period of time. Normally I see one or two, sometimes three. Interesting. My Reiki Master/Massage Therapist is definitely part of my healing team. Grateful for the professionals I put together to help me.

Dynamic Neural Retraining System (DNRS)/Poisoned

Sometimes this is how the body feels…

03/09/22-Started DNRS online tonight. I have always tried to be mindful about separating illness, and not owning it as part of me, because I have done a lot of research on neuroplasticity working with chronic pain patients. This is one of the things DNRS discusses. I did notice I was owning the symptoms as part of me and somewhat defining me more than I thought I was after doing the exercises. When someone would ask me how I was, I would always respond in relation to the MCAS symptoms or health-related responses. No wonder my brain was changing! I will no longer own symptoms, instead replace the word symptoms with “challenges or it.” To be more concise for the blog, I will try to be creative as I can with this yet try to communicate clearly, but in a detached way. Wow, challenge is an understatement!

03/10/22-The anaphylactic clock starts over. Improving my current environment has proven to be a challenge.  Every day is a fight through the day to clear the poisons with my wellness routine. The challenges are impacting my work. My employer (my FT job) is accommodating me to work from home for the next 3.5 mos, to help me achieve my goal. They have been good to me through all this. My husband is bringing the air cleaners from home; it will get better. I miss him and its hard to be away from him. I feel alone, like I cannot exist anywhere sometimes. Do you feel that way too? MCAS results in isolation that sneaks up on you. That is not a great way to feel. Tears….I feel like my body is impacted more again.

Moving Day!

Beautiful view from cabin

03/05/22-Moving day! Moved into my ‘safe space.’ It was off to a rough start with anaphylaxis and troubleshooting as the environment was not what it was when I toured, but with some education and trouble shooting things began to improve a little by 03/08/22. Created my wellness schedule for the next month. Also purchased Dynamic Neural Retraining System (DNRS) as part of my wellness plan. My goal is for the next 3.5 months is to be anaphylactic free. I would only leave for treatment with a desensitization practioner and infusions through my functional medicine physician. I also scheduled a Zoom Reki session for Saturday. I never experienced Reki via Zoom before, so that was interesting. My body is normally very sensitive to Reki with different sensations and usually a boost of energy after. I also note after Reki that certain joints that hurt prior to the session, no longer hurt for a period. During my Reiki session a flood of emotions came out and I was in tears. It was hard not seeing my husband every day and I missed my daughter (she is 19 and did not live at home). It was also a challenging week feeling poorly. I felt like I was being poisoned every day. A multitude of symptoms were worsening.

Skipping ahead...

Fast forward to worsening health and anaphylaxis reactions continuing into Feb 2022, It became necessary to leave my home to stop all the anaphylactic episodes I was having (lots of circumstances beyond my control). Lately it was happening 1-4x a week and it was taking a toll on my body and longer to recover from every time it happened. I toured a friends cabin that I recently reconnected with that was attached to her home. There were no issues while I visited. This would be my healing place with the goal of remission at the end of 3.5 months.

The Day After the Wedding

The next morning I got up, puffy again and some mild respiratory symptoms. We left for our mini honeymoon on the North Shore. Two anaphylactic reactions later, we had to stop at the emergency room because I was out of Epi pens. The physician put me on steroids as well so we could get through the weekend and enjoy our time. We had a wonderful time until we got back home and the anaphylaxis started again. I had so many reactions I have lost count. Our home was remediated, but the anaphylaxis continued along with rashes, gastrointestinal issues, and some odd neurological symptoms began to develop.

The Wedding→

The day after the fire, I awoke with a puffy face and rashes. Thank God for hemorrhoid cream and make up! I literally had hemorrhoid cream all over my face and eyes attempting to get the swelling down. It worked!! Lots of antihistamines and my inhaler, supportive supplements, and my day continued on. I was marrying the love of my life today!

The Fire

It was Friday, August 13, 2021, the day before my wedding. I was nursing a beta fish my daughter left with me who got sick. I researched beta fish illnesses and think I gave him the correct diagnosis. He was in and out of ICU for many months. He would heal and then get sick again. On August 13, I decided his suffering was too great and he need to be humanely euthanized, but I could not do it. I asked my fiancé to take care of “Leo, the Beta Fish” and I did not want to see what he was doing. So, he laid Leo to rest and we continued on with getting ready for our wedding the next day. I was marrying the love of my life and was so excited! We prepared for bed around 930pm when we smelled a strong chemical smell upstairs. We began searching for the source, but we could not find it and it became stronger and stronger. I had to get out of the house. First anaphylactic reaction. A few minutes later everyone came out of the house and my fiancé was also started to react. He called 911 and the fire dept came. They found the source which was a fish tank heater that was set down on the table; it was smoldering at this point. The firemen put it out and my fiancé and I sat outside until 2 am while the house was airing out. We went to bed, we have a wedding the next day!!

Back Story

Please read My Story on this page about my wellness journey thus far…I was healing and headed toward remission until a small fire (barely) in our home flared mast cell activation syndrome (MCAS). In my case, MCAS was acquired due to breast implants. That is when anaphylaxis started again and continued as I developed more severe reactions to the point I had to leave my home, and went to live in a cabin. My goal while I was living in the cabin for 3.5 months was remission….this is my story of next chapter of healing; my remission journey.